International Symposium on the History and Heritage of Leprosy/Hansen’s Disease

This is the first in a series of blog posts from the Assistant Editor of Leprosy Review, Irene Allen. She will be sharing an insight about her trip to the International Symposium on the History and Heritage of Leprosy/Hansen’s disease in Tokyo.

Introduction to the series

At the end of January 2016, I had the privilege to attend the ‘International Symposium on the History and Heritage of Leprosy/Hansen’s Disease’ in Tokyo, Japan. The Symposium, held 28th-30th January, was attended by delegates from Asia, the Americas, Europe, Africa, and the Pacific. Its aim was to “examine what is being done to preserve the history of leprosy in different countries, who the key players and agencies are, and how to accelerate these efforts before this history is lost.”

The three-day symposium was organised by Sasakawa Memorial Health Foundation with the support of The Nippon Foundation.

National Hansen's Disease Museum

We started the first day with a pre-symposium session on the history of leprosy in Japan. This took place at the National Hansen’s Disease Museum in Higashimurayama-city, Tokyo. The Museum is a very modern building, built on the site of an old leprosarium, and still houses a hospital for those with leprosy. It was originally established in 1993 as the ‘His Imperial Highness Prince Takamatsu Memorial Museum of Hansen's Disease’, as the royal family had taken an interest in the plight of those with leprosy. According to the late Dr Fujio Ohtani, the museum was founded for the 40th anniversary of the Tofu Kyokai Foundation, a non-governmental organisation set up by those with leprosy aiming to educate the public about leprosy and assist in the improvement of the life of those with leprosy residing in sanatoria. The Association is now still operating the National Hansen’s Disease Museum. In 1993, the Leprosy Prevention Law was still in existence in Japan. This meant that the museum was not only conceived as a commemorative undertaking – it was also hoped that it would function in a way to win public support for the abolition of the Law, which happened in 1996.

In the session, “Our History,” we were given first-hand accounts of what it is like to live with leprosy in Japan in the twentieth century. Three ex-patients of the leprosarium, Mr Michiyasu Fujisaki (73), Mr Yasuji Hirasawa (85) and Mr Osamu Sagawa (83), told us their story. They came in one by one, each of them severely disabled by the disease and having great difficulty walking – but if their bodies were not strong, their spirits certainly were! All had come into the leprosarium when they were young men, and they gave very moving accounts of their life with leprosy and the way they had been treated. Mr Hirasawa, for example, was only fourteen years old when he arrived in 1947. His story was quite harrowing: he had fallen in love with another leprosy patient, but had been forcibly sterilised when they were married.

Amazingly, all of them were very sanguine about their life and held no bitterness about their incarceration and the way they had been treated. However, they did feel resentment about the loss of their dignity and the violation of their human rights, and were resolved to keep the plight of those with leprosy firmly in the public eye. To this end, leprosy patients themselves had set up the Tofu Association in the 1950s, eventually culminating in the creation of the Museum and the fight against the Leprosy Prevention Law, which had been in force since 1909. After the abolition of the Law, they also sued the government, arguing that the Law had been unconstitutional, and won, gaining compensation from the government in 2001. Unfortunately, the compensation came too late for those among them who had already died. The Tofu Association has, over the years, planted hundreds of cherry trees in memory of those who died.

The three men now still give talks to parties of visitors to the museum and tell them their stories. They visit schools and other centres to spread the word about the treatment of those with leprosy and have become very celebrated in their own right. They always wish to interact on a personal level with everyone. They are remarkable men.

We would like to thank everyone who took part in our Life-Changing Tea. By hosting your very own Life-Changing Tea, you can help spread awareness that leprosy still exists and is curable. Your support allows those affected by leprosy to get the help they need.

Lepra Ambassador, Stuart Paver recently returned to India to see our Shoe Van project in action. Stuart was the driving force behind and funded the first van in Bihar through his company, Pavers Shoes. The project provides, safe, custom footwear to people with disabilities caused by leprosy and lymphatic filariasis through mobile vans.

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Leprosy is completely curable, if treated early. Yet, tragically many people diagnosed today will already have terrible disabilities due to late diagnosis. Over 3 million more people are living in the shadows, with undiagnosed leprosy, and every day the disease causes more damage to their bodies, lives and futures.
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